Taste of a Grapefruit, Rays of the Sun

So, I am off my psych meds for over a month now. And, I am beginning to remember that there are thinks I am allowed to do that have been off limits for years.

Slowly, the memory of these freedoms returns.

It is easy, when your life is already truncated by your condition to accept the limitations that are added with each new prescription. It is weirdly easy to forget to reclaim those rights when the prescription is discontinued or replaced. Or, at least, it has been so for me.

Over the years, there have been so many pills. And each one arrives from the pharmacy in a bottle adorned with festive stickers. The cheery stickers threaten fire and brimstone upon one’s hapless head for ignoring their dire warnings. Avoid sunlight. Don’t frikkin drive. Don’t be violent. Don’t get pregnant. Don’t eat grapefruit. Don’t have a cocktail. Don’t. Don’t. Don’t.  The pill bottles also arrive accompanied by a 3 or 4 page missive from the friendly pharmacist .(who, in reality, is often fairly unfriendly if you get tons of anti-psychotic and anti-schizophrenics filled there. The exception is Josh from CVS Monroeville, PA. The only pharmacist who has consistently treated me like a human being instead of like a rabid dog) The missives are printed in about 8 point arial font, front and back.

These missives should be titled “Don’t sue us-the doctor made us do this.”

For about the past ten years, I have read these completely. They are ransom notes for my soul. I didn’t used to read them. Then I managed a disastrous drug interaction that damn near killed me. No one ever believed it was not my seventh suicide attempt.  (With 6 prior major attempts, I can’t blame them really, but it truly was an accident that time)

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So, I began to live small. Avoided glasses of wine, sunlight, grapefruit, steroids, driving for weeks after starting a new medication, the list was endless…and it was only last week that I realized that none of those restrictions applied. Not now. Maybe never again.

Buying the grapefruit was more difficult than you might think. I felt like I was sneaking, buying illicit drugs, hiring a prostitute. I half expected to hear a voice shout, “Step away from the grapefruit!”

Of course, that didn’t happen. But I did feel the need to eat that grapefruit in secret. But it was delicious. To me. I understand that many people don’t care for grapefruit. Me, I love them. I prefer the white ones to the red or pink ones, but I love them all.

So that grapefruit was my first foray into a world that was not foreshortened by the rules of the medication. In short order, I also spent almost five minutes sitting in direct sunlight (I’m one of those soulless gingers-that was a long time in the sun for me) and then I borrowed my sweetie’s truck, and drove over to see my eldest daughter.

grapefruit

None of these acts was huge, or even uncommon for the average person. But for me, they were huge. I think they will continue to be huge, and there will be more of them as I slowly grasp that the medication is no longer the law of my landscape.

And there is some progress.

I leave my room almost every day now. I get dressed almost every day now. I am beginning to get the house clean.  I am beginning to be somewhat alive.

And I am managing my expectations. I know that the medications are not completely absent yet. There will be days where my balance is so shot to Hell that I don’t dare get up for fear of my own safety. (But I am beginning to factor my own safety and well-being into the equation) I know there will be days when my brain feels full of snakes. And the itching. Yesterday started the itching.

But even with the itching and the brain full of snakes, I feel like the sun is shining on me more often than not.

 

The Implied Lie

So the great lie.

No one ever told me the lie. Let me make that abundantly clear. But you don’t just randomly begin a thirty year long pill habit. Not the kind of pills I’ve been taking, anyway.

I remember the doctor sitting across the big wide desk, writing on his prescription pad. I remember him explaining that I would need to take these pills for the rest of my life. He then began to explain side effects. And trust me, when you swallow these pills, side effects become a huge part of your life. But he went through his whole spiel. Then he asked me if I had any questions. I had a few questions about the side effects-who wouldn’t?

But I didn’t think to question his assessment that I needed to take the pills forever.

I didn’t ask if the pills would make me better.

But, I was only 17. The idea of asking a doctor a question that did not automatically validate his authority had not occurred to me.

So, I swallowed the pills, and I believed the lie I was never told. I believed that the pills would make me better. I believed that when the pills were not making me better in any way that they were hard at work preventing me from getting much. worse.

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So I took my pills every day. Sometimes several times a day. Always several pills. And I had no idea that those early days were as good as it would ever get. Because, I was 17, it was still several years before anyone knew the word Prozac. So, by my current standards, the pills were cheap then.

Of course, Prozac changed all that. I was about 22 when it came out. It was green, and it was expensive. And it had sisters, brothers, and cousins. A rainbow of diversity as far as colors shapes and sizes. The great commonality of all of these pills were that they were expensive.

So, like any addict, I began the financial scramble to support my habit. It was never easy. Batshit crazy people are not very good at getting cushy jobs, or any jobs, or keeping those jobs if they get one. And, historically, employers are not supportive if you call in because “…this is just not a good day for me to get out of the hamper…*”

*actual quote

The only thing that crazy people are worse at than jobs is filling out forms to get some kind of support. Or even being brave enough to ask about such forms.

I will conservatively guess that my gross expenditures on psych meds all these years would have supported a pretty impressive cocaine habit. Or world travel, maybe even yacht racing…who knows? I don’t. I was buying into that lie with every dollar I could.

But, honestly there was no actual effect on the voices, the disorganization of thought and process. No effect.  The pills did not enable me to leave a place if I was having fear, did not grant me any sense of control.  They created the side effects that became the droning constant of my life, but that is all.

It is only in the past 6 months, battling with the eternal struggle of buying food vs. buying meds that I began to examine my complicity in never questioning the tyranny over my life that I had granted to these pills.

I began to search the internet for any cures of schizophrenia. The only ones listed were from very traditional shamanic cultures, and those are pretty rare. Usually those cultures just turn their schizophrenics into shamans and let them be.

And that was closer to my life as a priestess, as a healer than anything that the pills had ever offered.

I finally saw the lie that was never uttered. Patiently standing there, the invisible elephant in my parlor.

I continue to assure everyone that I am aware that discontinuing all of my psych meds is not a great choice. But every time I say it, it sounds more like good old bovine scatology.

 

 

3 Weeks, No Meds: checking in

Wow. Three weeks with no psych meds.

 

Three weeks of applied dysfunction in inaction. I’m not going to complain, though. While diligently taking all of my meds, I have been just as dysfunctional for the past 14 months. No forward progress, but no backward progress either. Stagnation is always highly attractive, I guess; or, at least I think so. I think that there is an aspect of stagnation in making beer, but I only think that. I don’t know a damn thing about making beer.

 

Physically, I am still crazy dizzy, and somewhat disoriented. A bit clumsier than normal, which is kind of sad because I’m fairly clumsy. I have not got anything to suggest that this is any worse than going off Effexor XR has been in the past. Mouth is dry (HAH! There’s a big surprise) I’m still twitchy and full of tics, and still chewing my tongue a lot. I am hoping that the twitches and tics will subside, but they are a known risk for several of the meds I have been on. Sometimes they go away in time, but sometimes they are quite permanent.

 

So, no physical surprises to report.

 

Not much mentally or emotionally either. In fact so far, the process is pretty boring. Largely, this is a pointless post. But I did promise some friends that I would keep them updated on the process. The process is boring. I am beginning to suspect that I have not actually entered the process yet. I think I have taken all of these pills so long that it is still going to be a bit of a wait before anything really changes. I still really do fear what those changes are going to be like. However, it is a really abstract fear-similar to being fearful of being bitten by a moray eel, which is fairly unlikely since I live in Pittsburgh and don’t go outside. Pretty sure that the bite of the moray would be the pits, but it is pretty irrelevant currently. (however, if I now have nightmares about being bitten by a moray, I’ll have no one but myself to blame)

Stigmata Moron

 

In a way, I feel a little bit let down that nothing has happened. For years, doctors have stressed how bad going off your medication can be. How sick you got, prone to violence, suicide, self-mutilation, how quitting these medications can lead to brain damage. The list of what would happen seemed endless. And I’ve certainly changed meds before and gotten the Hell transitions from it.  I was mentally ready to fight. The reality is feeling like you got worked up to enter a UFC fight, stepped into the ring and discovered that your opponent was a spoonful of runny instant mashed potatoes. Well, huh.

 

I assume that I won’t walk out of this without a struggle. And it is pretty certain that there are going to be some tough days, I won’t claim to be prepared, either. How the Hell do you prepare for something  utterly unknown or unpredictable?

 

So it goes on. Sitting still in my dark room. Just living the dream. Or it would be living the dream-if I was a portobello.

Poor decisions make the best stories

It is a brutal truth.

And I am the queen of poor decisions.  That has never actually been the goal, it just works out like that.

Who knows, really. This may be the grand daddy of all of my poor decisions. It certainly has all of the elements of stupid present and accounted for. Like every patient on psychiatric medication, I know that you are never ever supposed to stop taking your medication.

So, I stopped taking it all. I’m smart enough to taper it off by gradually decreasing the dosages. It took over a month. And, yes, I still feel pretty weird. My routine of swallowing my pills before sleeping is now all unhinged. I have NO idea how to go to sleep without that little ritual of swallowing pills. For over thirty years, I have swallowed pills, then gone to sleep.

Now, I just turn out the light and put my head down. And I lay there. Sleep is like a cheating husband. I know sleep is stretched out snoring away in some broad’s bed. But not this broad’s bed. It would be simple enough to get a sleeping pill. This is America, after all. Everyone I know has a prescription for sleeping pills. I could have a prescription for sleeping pills. But there are a few issues. First of all, I think pills and I need to see other people. And at the root, that is the only issue that matters.

I want to see if I can live without pills.

I need to know if schizophrenia is really the pathology I’ve been told it is. Or if I can live with it in a relatively normal way.

It is a generally accepted fact that there is no good way to live with untreated schizophrenia. I get that. And I am in no way trying to encourage anyone else to try this stunt. All of the evidence suggests that this is a terrible plan.

But, for me, viewing my schizophrenia as a pathology has not moved me closer to balance, health, or wellness. This model of being at war with the schizophrenia has done nothing but engendered a thirty year long civil war inside my head.

I have spent almost the entirety of the past 15 months in a darkened room. And even that has been a struggle. Through not working or having any health insurance, I have consigned both myself and my partner to an existence of grinding nightmarish poverty. Pac-man-like I have dutifully gobbled my pills. I went to the doctor. We have repeatedly bought psych meds instead of food. And the situation just continued to deteriorate.

So, yeah. It is a Bad Idea. I understand that.

But I am crazy. Not stupid.

How can this idea really be any worse than hiding from the world in a dark room swallowing drugs I can’t afford and watching my life dwindle into something so small and mean that no one would want it? I honestly had to wrestle that question for several months.

Frankly, I don’t think I have anything to lose by making this attempt. Not at this stage.

So, yeah. A bad idea, no doubt. But as far as my mental state goes, for the first time in over thirty years, this bad idea is MY bad idea.

I guess we can see what happens next.